Baby Miley given the ‘Gift of Life’ after receiving a Liver transplant at 15 days old | News

Baby Miley received a liver transplant when she was just 15 days -old, after she was diagnosed with acute liver failure shortly after being born.  

Miley was diagnosed with suspected Neonatal Hemochromatosis, a rare disease that causes acute liver failure when she was just six days old.  

Mum Jemma, from Kidderminster, knew something was wrong straight away she recalled: “During her first night at home with us, something just  didn’t feel right.  

“Our midwife checked her over and she said everything looked fine, but to take her into our local hospital for peace of mind.  

“We decided to go to the hospital there and then, and as soon as we got to the hospital, Miley stopped breathing.  

“We were rushed to Birmingham Children’s Hospital in the back of an ambulance, and it was all a blur from there.”  

Miley was put into a medicated coma whilst she had different tests done before being diagnosed with Neonatal Hemochromatosis.  

Her parents were then told that she needed an urgent liver transplant within the next two weeks, and Miley was put at the top of the list. 

Jemma said: “We were told that if Miley didn’t get a liver transplant within the next two weeks, she wouldn’t be here. 

“We tried to see if we could donate part of our liver to her, but because of what Miley needed, we were told it couldn’t be a living donor.  

“Because of how small she was, we were told the liver needed to be a certain weight, so we knew it was going to have to come from another child.  

“It was a horrible feeling knowing that and still waiting, especially knowing that we were under a time pressure.  

“The wait felt like it went on for so long, and we got a call for a potential donor two days after she was listed, but the liver wasn’t viable.

“We got a second call from the transplant coordinator in the early hours of the morning with another potential match, and this time it was viable , and Miley went in for the transplant surgery the same morning.  

“As recipients, we’re not told a lot about the donor, so all we know is that he was a young boy.  

“It felt like we were grieving for someone we’ve never met, and not a day goes back where we don’t think about him and his family and thank them for giving us and Miley this incredible chance.”  

Miley went on the urgent transplant list at just 12 days old, and when she was 15 days old, a viable donor was found, and Miley was taken into the nine-hour liver transplant surgery that same day.  

Jemma added “We went with Miley into theatre, and then we decided to go home and be with our eldest son, as there wasn’t anything else we could do but wait.  

“Every time the phone rang, we were jumping up thinking it could be the hospital with an update, but eventually they rang to say the surgery had gone well.”  

After her surgery, Miley had a slow recovery, and the team were unable to close her abdomen due to how small she was, and they planned to close her abdomen as she eventually grew and became stronger.  

Jemma commented “The plan was to close her gradually, but she wasn’t tolerating milk at all and wasn’t growing as fast as the doctors had hoped.  

“She needed to gain weight, so she was put on total parenteral nutrition (TPN) which was given intravenously, and she made some progress with that and eventually she was tolerating breast milk.  

“I couldn't even hold her for over two weeks after her transplant, and the first time I did she had to be placed on my lap with all her tubes taped to the chair.”  

After being on the PICU ward for a month, Miley was finally strong enough to move to Ward 8, our specialised liver ward.  

Unfortunately, the surgery scar still hadn’t closed, so the team decided to try using a VAC Machine.  

A VAC Machine is typically used on open wounds and burns and works by granulating enough tissue to bring wound edges together enough to close without the need for a skin graft.  

Jemma recalled “The team told us it was the first time they’d tried this on a post-transplant closure of Mileys age.  

“I was finally breast feeding her, and she was getting stronger every single day, and luckily the VAC Machine did its job, and they decided they didn’t need to do a skin graft.  

“She now has a large triangle scar on her abdomen that has no abdominal wall, but we call it her battle scars and hopefully one day when she’s older she’ll be proud of it and what it represents.”  

After five and a half months, Miley was finally able to go home with her family, and she’s now starting school and is thriving.  

Jemma added “If you met her now, you’d never known what she’s been through, she acts just like any other five-year-old girl.  

“She loves going to school and has made lots of new friends now, and she loves all things outdoorsy.  

“ We’re always thinking of the difficult decision the family had to make with their little boy five years ago, and I hope that we never have to be in that position, but having been through what we did with Miley the choice would be simple for us.  

“Organ donation genuinely does save lives, and it’s given Miley another chance at life where there really was no other option .  

“There have been some bumps along the road, but we try to take every day as it comes and make sure that us and Miley enjoy it as much as possible, in memory of her donor and how he literally saved her life.”